The Student Room Logo
You're seeing our new experience! Learn more

Chronic Fatigue Syndrome/M.E. Society

Avatar for Addnightshade13
Addnightshade13
5
Hey!
This thread has become the root thread for the All about M.E society! any one currently suffering with Me. know some one who is, or is just curious to know a little more about M.E and Chronic fatigue. is welcome to join the discussion
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)

The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:

Myalgic: Greek origin meaning muscle:s-smilie:
Encephalo: Greek origin meaning brain:confused:
Pathy: meaning suffering or sickness:eek:

There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time. with symptoms lasting from 18 months to several years. and in some cases sufferers never reach full recovery and too date there is no known medical 'cure'

Symptoms
Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.

Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. hyper sensitivity: skin contact causes intense sensations of Pain .Skin sensations such as skin crawling and pins and needles may be felt.

Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

I have Lived 7 years diagnosed and according to national statistics up to 1 in 2000 young people in the uk have been diagnosed or are in the process of diagnoses. but in 7 years I have never Met a single Person My age with the illness.
is there anybody else out there?:eyeball:

for more info Check out AYME
http://www.ayme.org.uk/article.php?sid=10&id=58
(edited 10 years ago)
Reply 800
Avatar for Anonymous #17
Anonymous #17
Hey,

So ive just been diagnosed with CFS/ME. I have to say, I'm gutted. Ive been told i have to go to some group session in two weeks where theyre going to do a presentation and i'll be there with 5 other patients. I hate group sessions and have anxiety so really stressed about this. Did anyone here have to do this first? Also, the dr who diagnosed me today said treatment includes therapy which i knew because i had looked into it online already but im already getting therapy and i know you cant do two at the same time so is this going to be a problem? Really gutted about this and dont really see how therapy is even going to solve physical problems. Can anyone advise what their experience has been like?
Reply 801
Avatar for Anonymous #16
Anonymous #16
Anonymous
Hey,

So ive just been diagnosed with CFS/ME. I have to say, I'm gutted. Ive been told i have to go to some group session in two weeks where theyre going to do a presentation and i'll be there with 5 other patients. I hate group sessions and have anxiety so really stressed about this. Did anyone here have to do this first? Also, the dr who diagnosed me today said treatment includes therapy which i knew because i had looked into it online already but im already getting therapy and i know you cant do two at the same time so is this going to be a problem? Really gutted about this and dont really see how therapy is even going to solve physical problems. Can anyone advise what their experience has been like?

Hi, I’m going to post my answer in 8 messages, as it’s quite long & I know if I saw a long message I wouldn’t be able to read it & most probably skip past it... 0/8
Reply 802
Avatar for Anonymous #16
Anonymous #16
I was diagnosed in October 2013 & went to a group session. There was quite a few of us (not just patients but relatives also - my mum was with me). There were three nurses who talked generally about cfs/me, what it is & how it affects you. Then as we were leaving, they gave us an A4 booklet thing about it all as well (as far as I can remember). 1/8
Reply 803
Avatar for Anonymous #16
Anonymous #16
I then went for 1:1s to see one of the nurses & she talked about Graded Exercise Therapy & setting two goals initially & building those up. So for me, it was 1 min on my parents static bike 4-5 times a week (I’d say if that sounds too much, just start with the no. of days you feel comfortable with to begin with). Every 2 weeks you increase the time by +20%, so I’d supposed to do 1 min 12 secs for another 2 weeks then increase it again. My other goal was walking. Again, starting with 1 min (or less). 2/8
Reply 804
Avatar for Anonymous #16
Anonymous #16
This type of therapy didn’t really work for me. Some weeks I could do it, but others I couldn’t, because my mindset was not good. It also didn’t help that the nurse didn’t take into consideration (she admitted after weeks & then taking my parents in to talk with her) my other health conditions, congenital heart condition, depression & anxiety. I also have dyspraxia which again she didn’t think about. Also, she wasn’t really listening to me when I said I couldn’t do something. 🤷*♀️ 3/8
Reply 805
Avatar for Anonymous #16
Anonymous #16
I don’t know how long after that my parents took me to my gp as I was getting worse (mentally at least) & she referred me to a physiotherapist. I remember before the appt I was thinking it was a waste of time, but after my initial 30 mins appointment, I actually felt mentally better, as I felt listened to for the first time! She put together a daily routine for me (which she said the cfs nurse should have done) & it went something like “get up” have a rest, “get dressed” have a rest, “have breakfast” have a rest, “do something small you enjoy” have a rest, and so on. She even said, which helped, that it doesn’t matter if I only manage half of the day. So she wasn’t putting any pressure on me. :smile:. 4/8
Reply 806
Avatar for Anonymous #16
Anonymous #16
I was still seeing the cfs nurse at the same time. So I don’t know about not having two therapies at the same time. I do follow a couple of Facebook pages made by & for people with cfs/me. If you’re on FB, they are cfsunravelled (also has a website (. Com)) & Community of Recovery from ME/CFS/FM. This is a private group. There may be lots of others as well. 5/8
Reply 807
Avatar for Anonymous #16
Anonymous #16
I hope these resources are helpful to you. It is frustrating going through an invisible illness - it’s finding the right mindset you need to be in to help you start recovery (which, to be honest, I do find really difficult even 7 years on - wow, I didn’t know it was that long!) What hasn’t helped me is my other health conditions either. Especially long term anxiety. I have recovered enough to manage uni part time though (I was housebound & couldn’t really do much). I’m just starting my first year of Level 5. 6/8
Reply 808
Avatar for Anonymous #16
Anonymous #16
Like I said, I’m still struggling with my mindset but I’m starting to try & get into a regular routine of meditation & possibly yoga (one simple yoga movement anyway 😅). Some people swear by meditation & Nidra yoga (a relaxing yoga practise). You’ll probably find lots on YouTube. :smile:. 7/8
Reply 809
Avatar for Anonymous #16
Anonymous #16
I hope you find the group session okay. Maybe take someone with you (if you can & it’s safe to do so). I hope my experience has helped you a little (maybe not the part about the 1:1s with the cfs nurse...😅). In the Facebook groups, there are so many people sharing their tips & advice so if you want, you’ll be able to get lots of info there! Best wishes to you. 🙂 8/8
Reply 810
Avatar for itsallphysics
itsallphysics
3
My daughter has had ME for 2.5 years. The other replies you've had are brilliant. A few things to add. Key thing: listen to your body. Rest, rest, rest. Graded exercise therapy (GET) isn't recommended at present. The illness is widely misunderstood including by health professionals - you will soon know more than most of them. ME Association website is helpful. Tymes Trust also great - aimed at children with ME, but great for helping others to understand what you're going through. Other aspects of your health (eg anxiety) need to be taken into account at the same time to avoid a vicious circle. If group sessions aren't right for you, ask for 1 to 1. Don't be afraid to push back/keep asking for what you need. If you are at school/uni it's worth seeing what extra support you can get. All the best.
Reply 811
Avatar for Anonymous #17
Anonymous #17
Anonymous
I hope you find the group session okay. Maybe take someone with you (if you can & it’s safe to do so). I hope my experience has helped you a little (maybe not the part about the 1:1s with the cfs nurse...😅). In the Facebook groups, there are so many people sharing their tips & advice so if you want, you’ll be able to get lots of info there! Best wishes to you. 🙂 8/8

Thank you so much for that. I'm really stressed about it which I know is stupid. Part of me feels like i dont even have it though because i don't feel as bad as others who have it say even though theyve formally diagnosed me?

itsallphysics
My daughter has had ME for 2.5 years. The other replies you've had are brilliant. A few things to add. Key thing: listen to your body. Rest, rest, rest. Graded exercise therapy (GET) isn't recommended at present. The illness is widely misunderstood including by health professionals - you will soon know more than most of them. ME Association website is helpful. Tymes Trust also great - aimed at children with ME, but great for helping others to understand what you're going through. Other aspects of your health (eg anxiety) need to be taken into account at the same time to avoid a vicious circle. If group sessions aren't right for you, ask for 1 to 1. Don't be afraid to push back/keep asking for what you need. If you are at school/uni it's worth seeing what extra support you can get. All the best.

Really? I didn't know that. It was the first thing my GP said they'd do, but I have no idea. Actually stressed about this meeting, I really don't want to go but feel like I cant really say no and demand a 1-2-1 when i Can go. I told them my concerns initially and they just said I didnt have to speak and it was a one off? Urgh i have no idea
Reply 812
Avatar for itsallphysics
itsallphysics
3
Anonymous
Thank you so much for that. I'm really stressed about it which I know is stupid. Part of me feels like i dont even have it though because i don't feel as bad as others who have it say even though theyve formally diagnosed me?


Really? I didn't know that. It was the first thing my GP said they'd do, but I have no idea. Actually stressed about this meeting, I really don't want to go but feel like I cant really say no and demand a 1-2-1 when i Can go. I told them my concerns initially and they just said I didnt have to speak and it was a one off? Urgh i have no idea

I understand your reluctance to turn down the session, especially as you've just been diagnosed. It's hard when you're feeling unwell and uncertain. None of the medics knows what it's like to be inside your body and mind, and they rely on you to tell them. My daughter's experience has been that body & mind are very tightly coupled with ME - a bad mental experience can result in greater fatigue. Here is some additional info that you can ignore if it's not useful. If you think your anxiety will make a group session counterproductive, it's ok to say so, and one would hope that the Dr would talk about that with you and find a better way forward. There's a formula for being assertive in a nice way, that goes something like this: W is the situation. X is how I feel about that. Y is the outcome I would like. Z is the likely outcome if we don't achieve the outcome. eg "I bought this bread which is mouldy. I feel that I cannot eat it. I would like a replacement or refund. I won't want to shop here again otherwise."
Reply 813
Avatar for Anonymous #17
Anonymous #17
itsallphysics
I understand your reluctance to turn down the session, especially as you've just been diagnosed. It's hard when you're feeling unwell and uncertain. None of the medics knows what it's like to be inside your body and mind, and they rely on you to tell them. My daughter's experience has been that body & mind are very tightly coupled with ME - a bad mental experience can result in greater fatigue. Here is some additional info that you can ignore if it's not useful. If you think your anxiety will make a group session counterproductive, it's ok to say so, and one would hope that the Dr would talk about that with you and find a better way forward. There's a formula for being assertive in a nice way, that goes something like this: W is the situation. X is how I feel about that. Y is the outcome I would like. Z is the likely outcome if we don't achieve the outcome. eg "I bought this bread which is mouldy. I feel that I cannot eat it. I would like a replacement or refund. I won't want to shop here again otherwise."

Wise advice. Thank you
Reply 814
Avatar for shuvasishgraphy
shuvasishgraphy
1
Excellent Blog! I would like to thank you for the efforts you have made in writing this post. I am hoping for the same best work from you in the future as well. I wanted to thank you for this websites
Reply 815
Avatar for Anonymous #17
Anonymous #17
Dumb question i know, but how do you pronounce the words what ME stand for? I dont like calling it cfs and everyone thinks its "just feeling a bit more tired" so id rather call it by ME but have no idea how its pronounced?!
Reply 816
Avatar for chelseacarknif3r
chelseacarknif3r
22
Anonymous
Dumb question i know, but how do you pronounce the words what ME stand for? I dont like calling it cfs and everyone thinks its "just feeling a bit more tired" so id rather call it by ME but have no idea how its pronounced?!

https://www.youtube.com/watch?v=uL8Q3n82ac0 this might help! This is how I say it too. It took a bit of practice though :tongue:
Reply 817
Avatar for chelseacarknif3r
chelseacarknif3r
22
Anonymous
Thank you so much for that. I'm really stressed about it which I know is stupid. Part of me feels like i dont even have it though because i don't feel as bad as others who have it say even though theyve formally diagnosed me?


Really? I didn't know that. It was the first thing my GP said they'd do, but I have no idea. Actually stressed about this meeting, I really don't want to go but feel like I cant really say no and demand a 1-2-1 when i Can go. I told them my concerns initially and they just said I didnt have to speak and it was a one off? Urgh i have no idea

Just so you're aware, the charity Action for ME has been working tirelessly on getting GET removed from NICE guidelines for years and they've only very recently managed it. You can read about it here: https://www.theguardian.com/society/2020/nov/10/fatigue-syndrome-exercise-therapy-loses-nice-recommendation
Reply 818
Avatar for Anonymous #17
Anonymous #17
chelseadagg3r
Just so you're aware, the charity Action for ME has been working tirelessly on getting GET removed from NICE guidelines for years and they've only very recently managed it. You can read about it here: https://www.theguardian.com/society/2020/nov/10/fatigue-syndrome-exercise-therapy-loses-nice-recommendation


Thank you for sharing that with me, much appreciated!
Also thanks for the YouTube link, i cant believe i didnt think about that myself haha!
Reply 819
Avatar for Jamnik44
Jamnik44
1
This is my first post on this forum. I’ve been diagnosed with M.E./C.F.S. although I don’t think this really counts for much since this is very much dependent on what doctor you see, and I had to see several to get this diagnosis. This makes me wonder sometimes whether I have it. Looking over this forum I certainly recognise the descriptions of brain fog, and my results during university have steadily decreased. I do a Maths degree, and although I can still understand the broad concepts and ideas I find the calculations very difficult. These days I even have some difficultly counting money at the shop.

However compared to most people on this forum I don’t seem to have anywhere near the same levels of tiredness. I even play 5 a side football with my dad when I come back home for the holidays, although I have nowhere near the level of fitness that I used to have.

I was just wondering if anyone else on this forum had a similar profile of symptoms to me. Sometimes I feel like a fake when I compare myself to the sufferers I sometimes see on the news.

Quick Reply

Related discussions

  • What can I do if I am treated unfairly following a college interview?
  • Any M.E/CFS sufferers have revision tips?
  • Physical Disabilities
  • Too many hours.
  • why am i
  • dealing with post viral fatigue
  • Feeling generally unwell and tired all the time :/
  • CFS/ME Dissertation study
  • What is ME?
  • Chronic Fatigue Syndrome/M.E
  • CFS/M.E and Fibromyalgia Awareness Day 2017
  • Should I bother getting kidney scan?
  • Chronic Fatigue Syndrome and Sex
  • Too many hours.
  • Chronic fatigue a week after COVID vaccination?
  • I have Chronic Fatigue Syndrome, ask me anything!
  • Ideal job for someone with autism and chronic fatigue syndrome
  • All I do is sleep
  • ADHD drugs for chronic fatigue
  • CFS/ ME experiences?
  • Being called out for being a Tory
  • I don't like hot girls
  • Official Keele University 2023 Applicant Thread
  • Name a boy's name which starts with the last letter of the above name
  • Transferring schools to online learning at a different school.
  • University of Newcastle A100 2023 Entry
  • [Official] Liz Truss resigns as PM; new Tory leader to be selected
  • Open university
  • What do you do if therapists despise you?
  • University of Oxford 2023 Undergraduate Applicants Official Thread
  • Nottingham Trent University (NTU) applicants thread 2023
  • The daily Wordle puzzle thread!
  • Too tired to do my uni work
  • Nervous about work experience at the vets
  • On find an apprenticeship does it require a lot of effort to apply?
  • The Official Cambridge Applicants for 2023 Entry Thread
  • Am I in the wrong?
  • Ask an Admissions Tutor applying age 21+
  • JP Morgan Work Experience 2022
  • Wearing retainers after 2 years

My feed

Poll

Yr13s: Have you made your mind up on your five uni choices?

Spotlight

Related articles

TSR Volunteer Team

We have a brilliant team of more than 60 Volunteer Team members looking after discussions on The Student Room, helping to make it a fun, safe and useful place to hang out. The Health forum is supported by:

1582,

BurstingBubbles,

CoolCavy,

Jack22031994,

Kallisto